Thanks to all contributors to this interesting and important thread so far. I tried unsuccessfully to reply to Tim a day or so ago. Trying again here now, why do different forums have so many ways to confirm reply POSTS...
I've been on Xtandi 2 x 40mg daily for just over three months, in addition to 4 monthly Lucrin depot injections.
My brief Prostate history: Laparoscopic removal of prostate in October 2013, Gleason score 9 but cancer was contained within prostate...
Excellent bladder control after 8 months but PSA started to return year after operation.
Irradiation of prostate bed 40 treatments(approx.) Which decreased my bladder control again... PSA started to return about year later and I commenced Lucrin depot injections thereabouts, which have kept my PSA in check until earlier this year when it started to increase again.
Have accurate figures and dates but haven't collated them properly yet. Last year a full body CT scan showed small tumor on left lymph node near hip. Unsuitable for cyber knife treatment due to proximity to major leg nerve.
Commenced Xtandi on 15/02/2019 and PSA declined immediately, also recent CT scan showed tumor on lymph node had reduced to half it's size.
Penis size not often discussed here that I've seen..? My experience was approx 2.5 cm decrease in penis length following prostate removal which did not improve in time. As someone uncircumcised, my flaccid penis became mostly foreskin.
The one consequence I noticed since using Xtandi is that the diameter of my penis appears to have reduced by at least 50% and like a cooked length of noodle it now has no rigidity whatsoever, to the point where I cannot pull my foreskin over my penis head. My ssecialist has advised that will probably stay... Small price to pay if it keeps PSA and tumor at bay.
I have never been prone to seizures but specialist did not particularly warn me of increased risk using Xtandi... My 80mg daily is a low dose I believe.
My wife and I lost interest in traveling several years ago and have not been overseas since treatments began.
Following your seizure comments I did a quick check.
Pubmed indicates at: https://www.ncbi.nlm.nih.gov/pubmed/29222530 that : "In controlled clinical studies, 0.5% (10 of 2051) of patients experienced seizure, but patients with a history of or risk factors for seizure were excluded. Men with mCRPC and seizure risk factors have an estimated seizure rate of 2.8 per 100 patient-years without enzalutamide exposure."
I'll be interested to see if anyone else comments on their Xtandi experience. Best Regards, Mishka
I am presently on Xtandi, for last 6 weeks, also on ADT monthly Lucrin shots, and I just finished 4 shots of Lu177 which has worked far better than chemo with far less side effects. I've been fighting Pca since 2009, Gleason 9, inoperable, had EBRT in two lots, Cosadex and Zytiga also, and I am too busy to get fatigued or depressed because Lady Luck installed a "Be Active" genetic trait in me and I thank her. Since 2006 I cycled 140,000km, and got both knees replaced during this cancer battle, and might get a new hip or two soon because Lady Luck wasn't kind enough to give me the right genes for an extended athletic ability. Chemo had the worst effect on me but I rode a bike every day, went out for lunch, and tried to make a few friends as must be done to stop going mad as I age.
So far, side effects of Xtandi are low with regard to heart rate, much less for me than Zytiga. But I do get one good hot flush a day, but that might be because I ain't cycling 220km a week like last year, and all during previous treatments. One hip gets sore in day a little, and at night, and its not just the Pca mets in femur and pelvis nearby, its cartilage wear, probably sped up by previous EBRT and the inevitable premature aging effect of ADT.
I was also a building worker for 25 years.
I am only able to live so long. Aunty Destiny can be so unkind, and Unkel Fait is the same, such bad relations, IMHO, but I live each day OK.
I need to get a skin check today. All that time in the sun during youth has caught me up....
It was a cold night, but today has brilliant sunshine, 20C, so what more could I want?
I don't envy having that stuff pumped in to me, beware the side effects.
In public Canberra Hospital I was offered Docetaxel which made Psa quadruple, and then doc doubted Cabazitatel would have worked any better although he said he had had some better results with it for some men. There were two higher and supposedly more aggressive chemos with carboplatin being one. My onco doc seemed to think all chemo has a low level of success on Pca bone mets so he said he'd be happy to refer me to Lu177 when the Docetaxel failed, which it did. There was trial at that time for Lu177 or cabazitaxel and you would be randomly assigned to either, and sure, the trial was free, but I was not going to take a risk that I was assigned to Cabazitaxel after it failed and not be able to get Lu177, so I just paid the aud $40,000 for Lu177. I had numerous soft tissue mets and bone mets, so that choice was best according to docs.
The Guvmint is in no hurry to approve PBS for all these expensive cancer fixes that merely lengthen lives and don't cure. In old days when 50%+ of men smoked 20+ ciggies a day, many were dead by 70, and there was no effective cure so the budget cost of old ppl was quite low. Well now, life expectancy is about 84 because less ppl smoke, and because of the large number of very expensive drugs, so the budget cost is far higher, so how do we afford the costs of 12 new submarines and a whole pile of medical expenses from the huge number of baby boomers all heading into expensive old age? Look what happened when Labor tried to raise taxes for these expenses. People rushed to Libs who they think won't tax them but the deficit may be far greater in 3 years, and who is ever going to repay it?
It does seem LU177 and Ac225, Ra223 are more effective than any chemo and for men with aggressive Pca except for endocrinal version of Pca that does not make much Psma and its often swifter to kill a man.
Not all men are able to get benefit from Theranostic treatment with Lu177 or Ac225, but many with bone mets could do well with Ra 223 because it is absorbed to bones where calcification is going on at bone met sites.
Afaik, it Ra tries to replace calcium wherever calcium is being uptaken, maybe where arthritis is developing as well as Pca, but the amount is small because usually arthritis is a slower growing condition than Pca, so whatever Ra 223 that finds its way to other places in body is a small amount. The Ra 223 has a short half life like all these nuclides so its not going to do enormous damage unless a man has too much of the stuff. Older men probably don't have to worry about fertility of sperm, or mutation of it, or mutations causing leukemia given enough time.
My present use of Xtandi or enzalutamide is costing Guvmint a huge amount, and so did Zytiga, these are just pills you take, then there is continuing monthy ADT injections. But these are paid fully by Medicare. But I've had umpteen scans that have probably cost out of pocket over $10,000 so far in my battle since 2009 diagnosis at 62. I have Xrays soon to see if my hip joints need replacing because one is painful at night and has stopped me cycling. I see a hip&knee doc on 5 June, and will get on waiting list, about 180 days at least. This is if I get Pca "under control", ie, Psa nice and low, or about 1.0, so that the op can be justified because I'll be alive for a few more years and need my mobility. Before having knees done, a private doc said there was a 9 month wait, not much less than public system.
With Lu177, I was able to be treated within 4 weeks of the last chemo I had, ie, in a fairly timely manner, and with cancer I could not afford to dither about. I guess I am lucky to have slow growing version of Pca. But it wants to take me out. Other men can have different forms of Pca, some are weak, and easily treated and don't spread, some are faster than others, and more aggressive, so what works for one man may not for another.
What the Guvmint never credits ppl with is the amount of dough old men leave to others in the form of a big tax free handout. All of society gets a huge benefit by the status quo action of inheritance in Oz. No need to tax it because whoever gets it will spend it thus generating better GDP and employment et all. The politics of envy of the rich is questionable, and every rich old fella can't take it with him, so it goes out to his descendants to fertilize the economy, IMHO. Put another way, when I die, my house will more than pay for all the take from Guvmint for expensive cancer treats. There is a huge amount now in super funds, trillions, so how come society acts like it does not want to give longer lives to cancer sufferers?
You didn’t mention the dose of Zoladex that was prescribed. It may be that if the 3-month supposed effective dose of 10.8mg was administered it caused you the issue for which you remark. If this is the case, perhaps getting the one month (actually every 28 days) dose of 3.6mg will not cause you the same issue, and would certainly provide better ADT than merely Casodex/bicalutamide or Xtandi/enzalutamide alone. If this monthly dose is tolerated, then after three or four months you could then try the 3-month dose and possibly not have the same issue since your body will have learned to tolerate the medication.
If your cancer is still hormone sensitive, the Xtandi may serve a greater purpose than Casodex, since Xtandi is considered somewhat a “super” androgen receptor blocker. Xtandi is not a replacement for Zoladex. As I note, Xtandi is an antiandrogen designed to better inhibit androgen (aka testosterone) from accessing the multitude of androgen receptors on cancer cells. Zoladex is an inhibitor of androgen/testosterone testicular production.
Might I suggest that you have your Prolactin level determined (reasoning https://tinyurl.com/7w5omeo). Next determine if your testosterone (T) level and your dihydrotestosterone (DHT) level are elevated. If so, then the addition of the 5Alpha Reductase (5AR) inhibitor dutasteride/Avodart could be considered to add to your current ADT to prevent testosterone (T) conversion to DHT (the up to five times or more powerful stimulant to prostate cancer cell growth and proliferation than T) when T comes in contact with 5AR.
BUT PLEASE ALSO NOTE: Medications involved in Androgen Deprivation Therapy (ADT) are known to increase cardiovascular risk. Thus, IT IS IMPORTANT that prior to prescribing any form of ADT medication the patient’s other health issues, that would include already present cardiovascular issues, are determined. As noted in:
“Androgen deprivation therapy (ADT) has been the mainstay of treatment for advanced prostate cancer for decades and has been shown to control disease and improve symptoms. In addition, for men with high-risk localized or locally advanced prostate cancer, short-course ADT in combination with radiotherapy improves survival. There is evidence that ADT increases cardiovascular risk, particularly in men with preexisting cardiovascular disease. This increased risk may apply even with short-course ADT. In an individual patient, the benefits of ADT should be balanced against the risk, and patients who require ADT should have risk factors for cardiovascular disease optimized. There is some evidence to suggest that more contemporary methods of delivering ADT may reduce cardiovascular risk.”
Dr. Matthew Roe, a Professor of Medicine at Duke University’s Clinical Research Institute (DCRI), the Faculty Director of the Global Outcomes Commercial MegaTrials program, and the Director of their Fellowship Program, remarks: “If a patient who has advanced prostate cancer and known cardiovascular disease is being considered for androgen deprivation therapy, it is important that he speak with his cardiologist. (Presumably, both a cardiologist or cardiovascular specialist and a urologist or oncologist would treat him.) He needs to ensure that all the providers have a discussion about what the best and safest treatment would be before therapy begins. Obviously, this trial (the PRONOUNCE trial regarding which is safer for patients with cardiovascular issues, the GnRH agonist Lupron or antagonist Firmagon (or neither?) https://tinyurl.com/yxnw5kb6 ) is not completed yet so we don’t have any answers. In the meantime, it is certainly in the patient’s best interest to ensure that his providers are communicating and trying to jointly determine the right approach.”
Unfortunately, we prostate cancer patients have to determine with our treating physicians when the benefit of drugs to serve controlling our cancer outweigh the side effects we may have to learn to endure.
DISCLAIMER: Please recognize that I am not a Medical Doctor. Rather, I do consider myself a medical detective. I have been an avid student researching and studying prostate cancer as a survivor and continuing patient since 1992. I have dedicated my retirement years to continued deep research and study in order to serve as an advocate for prostate cancer awareness, and, from an activist patient’s viewpoint, as a mentor to voluntarily help patients, caregivers, and others interested develop an understanding of this insidious men’s disease, its treatment options, and the treatment of the side effects that often accompany treatment. There is absolutely no charge for my mentoring – I provide this free service as one who has been there and hoping to make their journey one with better understanding and knowledge than was available to me when I was diagnosed so many years ago. IMPORTANTLY, readers of medical information I may provide are provided this “disclaimer” to make certain they understand that the comments or recommendations I make are not intended to be the procedure to blindly follow; rather, they are to be reviewed as MY OPINION, then used for further personal research, study, and subsequent discussion with the medical professional/physician providing their prostate cancer care.
Charles (Chuck) Maack (ECaP) - Continuing Prostate Cancer Patient Since 1992, Advocate, Activist, Volunteer Mentor since 1996 to men diagnosed with Prostate Cancer and their Caregivers locally and on-line Worldwide
If you are considering Xtandi monotherapy, discussing newly approved in Oz, Erleada (apalutamide) with your med onc may be appropriate.
We are aware of a couple of situations here in the US where monotherapy apalutamide is showing success. It has been used by a highly reputable GU med onc at Mount Sinai, NY, Dr. William Oh. Listen to this Sept 2018 recording of one man speaking about his experience ... https://ancan.org/monotherapy-apalutamide-erleada-a-discussion-with-al-pfadt/